Majority of doctors opposed to full access to your own electronic records

Technology is making transparency easier than ever, and with the advent of electronic medical records, you might think doctors and other caregivers would embrace transparency for patients. After all, in the US and most modern counties, you have the right to review your own health records.

Yet a recent survey by Harris Interactive, reported first at Computerworld, reveals that doctors aren't big fans of full transparency. A survey of 3,700 doctors in eight countries showed that only 31 percent believe that patients should have full access to their own medical records via electronic means. That's less than one in three. The majority of those surveyed, some 65 percent, supported "limited access," while the remaining 4 percent believe there should be no access granted to patients. So, despite the fact that we have rights to review and amend our records, doctors don’t want it to be easy for us to do so via electronic means.

I find these numbers incredibly disappointing, but they're not surprising. While there might be many motivations for wanting to deny patients full access to their medical records, I know firsthand one such motivation: these documents can be terribly inaccurate. Mistakes can run from the serious to the banal. Ars’ own Casey Johnston told me her medical records reported her birthdate incorrectly. Not a huge deal, but sort of a silly mistake to make.

I experienced something a little more serious. A few years ago I decided it was time to get some life insurance for me and my wife. Because we were seeking a significant policy, we were put through a fairly intense wringer, including a battery of medical tests conducted in our home and an extensive review of our medical records, in addition to multiple interviews. Through this process, I came to realize that my own medical records were littered with inaccuracies. For instance, the length of time that I had one specific condition had been significantly misstated. Another medical matter was listed that simply did not apply to me. Combined, these 2 issues could have cost me thousands of dollars over the course of the term of this insurance if I had not successfully resolved them. And this says nothing about how potential errors in records could lead to ineffective or even fatal treatment in an emergency situation.

What shocks me about all of this is the lack of concern online. The Internet took great umbrage at the likes of Twitter and Facebook before those companies liberated their users’ data. Why is it that we care more about getting access to our history of tweets than we do about getting electronic access to data about our personal health? In Massachusetts, doctors are given 3 weeks to respond to a request for a copy of patient records, and hospitals are given a full month. But in the world of electronic records, such access could be instantaneous.

Perhaps what is most irksome to me is that despite the lack of support for full access, 82 percent of those doctors surveyed do want patients to update their own records with regard to “demographics (95 percent), family medical history (88 percent), medications (87 percent) and allergies (85 percent),” according to the report. “And, the majority of doctors (81 percent) believe patients should even be able to add such clinical updates to their records as new symptoms or self-measured metrics, including blood pressure and glucose levels.” In other words, “please make our job easier to care for you, just don’t ask to see everything we are writing about you.”

In the end, the age of the godly doctor and the supplicant patient is coming to an end. It will likely take decades, but I wouldn't be surprised to see in my lifetime some iterative version of IBM's Watson occupying a corner of everyone's home, diagnosing and potentially treating a huge range of maladies. Artificial intelligence, nanotechnology, and the Internet (to just mention 3 major vectors) will converge to transform medical care and alter the meaning of what it is to be a doctor. Full and complete access to one's own medical history is a prerequisite to this progress, and doctors who stand opposed to it are ultimately standing in the way of progress.

Unfortunately, the survey did not expound on why doctors do not support full transparency via electronic medical records. Assuming a system is secure enough to allow users to add to their own electronic medical records, which most doctors do support, one would imagine that it should be secure enough to allow full viewing of the record. It's hard to imagine that information security lies at the root of this. If we're lucky, maybe some doctors will show up in the comments and let us know what's so bad about full transparency via electronic records.

Promoted Comments

Ken, I think this attitude is changing among many medical professionals, but it takes time. Physicians have generally had more fears about patients misunderstanding medical terminology & results and asking too many questions than what's actually happened in studies. I feel it's helpful for patients to review their records, since as you said, documentation errors happen, and it's important to correct these errors. Shoot, the financial and legal climate in medicine is such that many physicians put so much time in writing good, detailed notes that it's a shame if almost nobody reads them. Like you said, people have always had the right to access their records, but the trouble one needs to take for physical vs. electronic records is different.

However, sometimes easy access--because there really are people who will look at these records online, but wouldn't have gotten them on paper--does cause confusion. One example I can remember is that my patient say the term "renal failure" in a note, and disputed that she ever had it. She actually did--she was admitted once with acute renal failure that resolved with medical management--but the term caused confusion. Doctors have been advised to decrease use of potentially confusing acronyms, e.g. SOB for shortness of breath, due to the increased chance that their readers may not be in the medical field.

The CIO of BIDMC posted about an initiative to give patients access to their electronic medical record. Overall, I'd say their study alleviated some fears people had about what would happen when patients had increased access to their notes. Moving forward, my understanding is that things like radiology results which will get discussed soon in person at an actual appointment, there's a delay for things to appear online to patients still have the opportunity to be educated in person with their medical team about potentially confusing findings like small lung nodules, sclerotic changes, or benign masses. My future organization also has a patient gateway where patients can review their own lab & radiology results, so it seems like medical groups realize this is something patients care about.

Ken Fisher / Ken is the founder & Editor-in-Chief of Ars Technica. A veteran of the IT industry and a scholar of antiquity, Ken studies the emergence of intellectual property regimes and their effects on culture and innovation.